On Monday, I had a very difficult discussion with Kira. Well actually it didn’t really get anywhere. I tried my CPH presentation on her, which failed totally cause I got stuck almost immediately. I was so confuxsed or something like that, which is strange since I think I should know what is at least important and then I only run a risk of leaving out important info. Still, I got stuck and I couldn’t get anywhere. Kira was somewhat concerned cause I seemed so uncertain. I am and I don’t want to be. Maybe I should be more concerned with the form of my statements and less with their content, but I’m still confused about that. I’ll discuss this situation later.
On Tuesday morning, Hennie asked me about CPH and I said we’d discussed cases but not mine yet, which we were going to on Friday. Somehow, we got to speak about my case and what to explain and not to explain. For some reason, at that moment, she asked me the question whether I see myself as partially sighted or as blind, even though I have light perception. I’ve not gotten this question in any other tone than neutral – which this question clearly wasn’t meant to be – for nearly eight years – since the 1998 educational evaluation -, but for some reason, it didn’t surprise me that in the course of CPH I would sometime get the question. It’s meant to signal a connection between one’s explanation and how one feels about one’s vision impairment, and I’ve questioned the existence of this connection many times over the course of these seven weeks. It was what I explained in one of the first CPH meetings: that my parents always connected any mention of or reference to residual vision to poor adjustment to blindness. Ellen has commented on this statement of mine many times, and each time it prompted me to evaluate the facts around the topic: I couldn’t say honestly that I was totally fine with my blindness, but I could say that the reality of my vision or the lack thereof was something I accepted fully as it was – and, indeed, not as what it might become: total blindness. I mean, sometimes I hate my residual vision and wish I could turn it off, and sometiems I’m happy I have it. Either way, it is exactly the way it is. I answered Hennie’s question by saying that I saw myself as blind, cause I do. Then she got into some questions about how I felt about my blindness which I didn’t fully understand. She somehow connected it to a statement I once made about my father telling me not to “handicap” when I falsely connected a problem to my blindness. She asked if blindness at that moment didn’t have a negative connotation? Of course it did, in that I irrationally attributed difficulties to it, but I must honestly say that I’ve improved pretty much in not “handicapping” over the past while. Meanwhile, by the way, I’d lost the thread of discussion.
For some reason, Hennie got into an explanation of my being functionally blind, apparently to rationalize why it made no sense to explain anything beyond “I’m blind” to a professor. A pretty strange question in this context was whether I use my vision for mobility. Yes I do, but I mostly use alternative techniques and besides, I wouldn’t consider that to be relevant to a professor anyway, and as far as fellow students are concerned – they could just ask. I agreed to all she said and tried my explanation on her several times, each time leaving out more and more details, but eventually each time getting stuck. “Aren’t you done with that?” she asked after one of my explanations ending in my getting “locked up inside”. She meant to say that it was most likely enough info. I can’t remember if I thought so or not, or why I got stuck in that particular situation. I couldn’t explain why I got stuck anyway. We’ve been discussing the “locked up iside” feeling before and she asked me if this was a form of it. It obviously was. In this case, by the way, I wasn’t finished with my explanation yet, and I knew exactly what I would also have to explain, but I could do nothing with it. It’s almost a standard course of the “locked up inside” thing: I know perfectly well what to say or do, but for some reason I feel kept from going on. I know, rationally, that I can and should do whatever it is, but often I sort of feel like I ain’t allowed to. Hmm, I’ve always believed, and still believe, strongly in the power of “mental alarm clocks”, as Monika calls them. Hennie theorized that if I thought I couldn’t explain my situation, I truly couldn’t. I guess this idea does contribute.
On Tuesday afternoon, I decided that Hennie was right that there was absolutely no relevance in mentioning my vision – if people were interested, they’d ask me anyway. Explaining vision is something much more controversial than appreciating it, and using it is in between: no-one can ever tell me not to appreicate the vision I have, people can point out the effect using vision too much has on me – like Martin on Wednesday correctly informing me that I was concentrating less on my cane cause I was concentrating on my vision -, and of course people can tell me that it doesn’t have any relevance to explain vision to professors or fellow students, for that matter. I don’t contend, by the way, that this has anything to do with adjustment, cause the average professor or college student doesn’t give a damn whether I’m adjusted or not, and no-one except for me can conclude accurately how well-adjusted I am.
On Friday, I eventually had my case discussed. I can’t remember how exactly it all went, cause we discussed and roleplayed in many different situations. Sometime early in the discussion, we got to speak about what I was going to explain and I mentioned my intention not to explain vision, since the more irrelevant details you provide, the more likely the chance that people will forget truly important information, like that they need to provide their information in a digital format. No-one seemed to agree. I once again mentioned the fact that if you say you’re blind, they’ll likely attribute anything they see to your blindness. No matter how incorrect this is, it’s not in itself a reason to explain about vision. I said that with fellow students the situation might be different cause you don’t have only academic contact with them, but a professor wouldn’t give me a minute less of class if they didn’t understand something about my situaation.
I could, of course, use some politically correct term like “nearly blind” to identify myself as, as to avoid confusion should my light perception be an issue but as to not overemphasize vision. However, I didn’t really understand why people, no matter their relationship to me, would actually wonder about my situation given the information that I’m (totally) blind. I mean, to take the classic example of looking for sidestreets: that could just as well be some blindism. Monika, who attended the training, contended that most people didn’t know about blindisms anyway. That doesn’t matter: it matters that they’ll think that of course it’s the way it is cause after all she’s blind. Ellen explained how my behaviour is clearly different from that of a totally blind rehab folk she knows: not as in a negative or positive way, just different. Monika also gave the example of my looking at an agenda. Well yeah, still I guess hardly anyone at high school would have known or even wondered about my residual vision had I not at one point mentioned it. In the eleventh grade, Mrs. Van O. asked me about it, while she’d taught me in seventh and eleventh grade.
Of course, there’s the one difference of my currently being very light sensitive and wearing orange sunglasses – well, if I can get them, which I still can’t -, which according to Ellen are far too light to be seen as glasses to hide a blind person’s unattractive eyes. I never wore sunglasses in high school – during twelfth grade, when I finally had them, I felt embarrassed about wearing them in school cause at that moment they couldn’t be seen as camouflage glasses anymore cause I’d not worn them before – so I don’t know if people would wonder about them.
We roleplayed many situations. One was a situation I had encountered in crafts class where I reacted rather curtly to another student (who is in my CPH group) offering me assistance. I can’t remember how we got to speak about this situation, but at first I was asked to play “me”, ie. to act how I’d act. Then, Monika acted “me” and then I was asked to act like Monika would. Monika is a very spontaneous woman, so that’s how I acted. It didn’t surprise me that the result was quite different, cause I’ve always known that I’m a quite good roleplayer and have in fact, hopefully unnoticeably, often used my abilities in getting out of “locked up inside” situations.
We also got to do the explanation to professors. It went, at first, totally wrong and I got stuck. I later tried to play the spontaneous person once again. We drew the conclusion that it would be a good idea for me to write some “introduction” in advance for the professors to read, which I could then later explain further about. It would also somewhat settle the issue of what is and isn’t relevant, cause I could ask the folks if they had any questions. By the way, eventually the explanation to professors went pretty well, and so did the explanation to fellow students I tried, cause I only gave a brief introduction but made clear that questions were welcome.
In the end, Ellen asked me to make a list of all the adaptations I’d need in college, as to build my introduction upon. She divided them into technical adaptations, like a braille display and computer, human assistance, and other things that would make class more comfortable for me. I made a start with the list, but it’s by far not finished yet. I think I’ll ask my father if I can have the introduction he wrote for the high school.
Next week, Ellen can’t give the training, so we were seeking another moment. On December 23, I could come wihtout difficulty, but the student who will have her case discussed than couldn’t attend. December 30 would be fine if it were discussed with my counsellor, who told me that if I wasn’t completely finished by December 23, I could do some activities in the next week. However, then another student couldn’t attend, and we are only three or four people in the training. Ellen proposed January 6. I said I thought it wouldn’t be a problem but asked her to discuss it with my counsellor. Another option would be some other time next week, but Ellen has a very busy week then, so it’s going to be January 6.
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